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What it Means to be Intersex

interACT youth advocates marching in the 2015 NYC Pride parade

On the spectrum of sex and gender, one group is finding its voice.

One in 2,000 people are intersex — people whose bodies don’t fit the traditional definition of male and female — and they’re fighting for doctors to leave their healthy bodies alone and to be rid of a history of stigma.

“There are over 30 different intersex variations; there’s a lot of ways somebody can be intersex,” said Emily Quinn, the youth coordinator at interACT, an intersex advocacy group.

This can include extra sex chromosomes, underdeveloped genitalia, signs of two sets of genitalia, and more. At interACT, youth are taught that their bodies are not something to be ashamed of.

When Quinn was born, doctors had no reason to suspect that she was intersex because outwardly, she appeared to have a typical female body. However, when she was 10 years old, she had chromosome tests and an MRI done and her doctor discovered that she had undescended testes.

Many find out they are intersex when their puberty is atypical, such as girls never getting their period or boys’ voices not dropping. Others will discover they are intersex when they have difficulties getting pregnant and run tests, or if their testes herniate.

Some people will go their whole life not knowing.

“There’s definitely been a shame and stigma around intersex bodies,” Quinn said. “People are taught there’s male and female and nothing else.”

The gender and sexual spectrum is a large one, and many people confuse intersex people with being transgender or hermaphroditic. While there may be overlap in medical treatment, the three are very different.

Transgender people are born with typically functioning bodies that do not match with their self identity — children often notice that they don’t “match” from an early age, and as adults can choose to undergo surgeries to their level of comfort. Hermaphrodites are born with both fully functioning male and female sex organs — but being a hermaphrodite does not occur in humans. Finally, there are dozens of ways that one can be intersex, such as having both sex organs, ambiguous genitalia, or chromosomes that aren’t aligned with the average person’s.

Margaret Porter, a sophomore at the University of Central Florida, is an intersex youth advocate with interACT. Her Complete Androgen Insensitivity Syndrome, falling under the intersex umbrella, was discovered when she was 4 years old when doctors were treating a hernia. While undergoing surgery, doctors found she had undescended testes and encouraged her parents to have them removed, citing a risk of testicular cancer.

Being both intersex and a biomedical sciences student, Porter has a unique perspective on the removal of her testes.

“I see both sides of it as a pre-med student and an intersex girl, but the historic policy of doctors towards intersex individuals has been far more cosmetically focused in an attempt to placate parents rather than provide for the future happiness of the, usually very young, patient,” she wrote in an email to Mirror.

Because her testes were removed, her body is unable to produce sex hormones as her female sex organs are nonfunctioning. Porters points out that “I require treatment because I was treated in the first place.”

The removal of sex organs has been highly controversial in the media and intersex communities for decades. Stories abound of doctors removing organs without parental consent or scaring them with horror stories of cancer and medical problems, or telling parents they must “choose” their child’s sex and raise them that way to avoid problems.

Dr. Sherman Leis, the founder of The Philadelphia Center for Transgender Surgery, has been an advocate for not doing surgery on young intersex patients until they are old enough to decide for themselves what they want.

“It’s super important that they leave the child alone, let the child grow a little bit,” he said. “They identify themselves very early in life — it’s amazing how early they really identify themselves.”

Although his transgender and intersex patients are very different, their treatment can overlap. Some patients might undergo medically necessarily surgeries, while others might want to remove underdeveloped sex organs for aesthetic purposes. Some patients are happy the way they are, and if the organs are not hurting them, want to leave them be and monitor them with their doctor.

In cases like Porters’ hormone therapy is necessary to make sure that hormone levels are where they should be. For young children who might not be as reliable with their treatment, doctors can insert an implant in their arm that releases hormones.

However, in his decades as a surgeon, he has seen the consequences of intersex adults coming to him for help to fix the mistakes that doctors made on them as children — something he says he sees “regularly.”

For Quinn, doctors have been pushing her to remove her testes for a decade. However, she has chosen to not undergo surgery but instead monitor to make sure they are not impacting her health negatively.

Leis agrees with this approach.

“I hope we can educate other physicians about the right way to handle these kids and not do the mistake that was made for many years, that the pediatrician or the obstetrician or the parents decide shortly after birth which gender they think the kid is and get surgery right way, that’s a really big mistake,” he said. “Some parents are just so upset about the whole thing they refuse to cooperate.”

Thankfully, Leis says in his time as a doctor he has seen more and more children’s hospitals opening gender identity clinics to properly treat young patients. This includes Boston Children’s Hospital, Children’s National Health System in Washington, D.C., Children’s Hospital of Philadelphia, Children’s Hospital Los Angeles, and Cincinnati Children’s Hospital.

“Things are changing now, they’re slowly changing, especially in the last five years or so,” he said. “Little by little, things are happening.”

“Other people will surprise you,” Porter said as advice to other intersex people. “Yes, some people are ignorant, but you are wonderfully special, the result of endless recombinations and shifts of genes. And there are many people in this world who will accept you as you are, if you can accept yourself.”